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Tuesday, October 7, 2014

For All Those Who Care Deeply About Dyslexia: A Major Step Forward

We are so very happy to share with you what we believe will go down as a landmark in the history of dyslexia. On Thursday, September 18th, 2014, a hearing was held before the full Congressional Committee on Science, Space, and Technology on “The Science of Dyslexia.” We are especially proud that the Yale Center for Dyslexia & Creativity was well represented.

Co-Directors Bennett A. Shaywitz, M.D., the Charles and Helen Schwab Professor in Dyslexia and Learning Development, and Sally E. Shaywitz, M.D., the Audrey G. Ratner Professor in Learning Development were consulted. Dr. Sally Shaywitz was invited to testify on the main topic, “The Science of Dyslexia” at the hearing itself.

“… typically, in our school systems today, there is not recognition, early detection, or enough teachers who are trained to spot symptoms of dyslexia early enough to get the students the intervention they need.”

Dr. Shaywitz emphasized that while more knowledge is always welcome, “In dyslexia, there is an abundance of high quality scientific knowledge so that we have not a knowledge gap, but an action gap. It is our hope that hearing the depth and extent of the scientific knowledge of dyslexia will alert policy makers to act and to act with a sense of urgency.”

Chairman Smith concurred, “… our current understanding of dyslexia is not being fully utilized in either policy or practice.”

Resolution 456: The Most Up-to-Date, Scientifically-Accepted Definition of Dyslexia

Strong support for Congressional Resolution 456 was expressed by speakers including Rep. Smith, Rep. Cassidy and Dr. Shaywitz, among others. Perhaps most importantly, Resolution 456 calls on “schools and state and local educational agencies to recognize that dyslexia has significant educational implications that must be addressed.”

As noted elsewhere on this website, Resolution 456 provides the most up-to-date, universal, scientifically-accepted definition of dyslexia including:

it is an unexpected difficulty,

the scientific basis and basic difficulty and its resulting symptoms,

its paradoxical nature—the same person who may be a slow reader, may also think and reason extremely well.

Over 100 representatives have already signed on as co-sponsors of Resolution 456, key to the advancement of understanding of dyslexia and better treatment of all those who are dyslexic. It is the hope that as a result of this landmark hearing constituents will urge their own representative to sign on as a co-sponsor of Resolution 456.

Dyslexia Differs from Learning Disabilities in Its Specificity and Scientific Validation

The Committee was interested to have clarified the relation of dyslexia and the term, learning disabilities: dyslexia represents over 80% of all learning disabilities, and differs from the others in its specificity and scientific validation. Dr. Shaywitz testified that rigorous research indicates dyslexia is very common, affecting one out of five, and persists.

Dyslexia: Unexpected Difficulty in Reading

Since its original report in 1896, in the British Medical Journal by a physician, Dr. Pringle Morgan, dyslexia has always been conceptualized as an ‘unexpected’ difficulty in reading, that is an individual can be quite bright and read at a level much below that expected of a person of his or her ability.

More recently, the Shaywitz lab provided empirical validation of the unexpected nature of dyslexia. The data indicate that in typical readers intelligence and reading track together; they are dynamically linked.

“In contrast, in dyslexia reading and intelligence are not linked, so that a child (or an adult) can have a very high level of intelligence and unexpectedly read at a much lower level, providing incontrovertible evidence that a person can be extremely bright and yet struggle to read.”

Dyslexia is a paradox, that is, conforming to the Sea of Strengths conceptual model championed by the Shaywitz’, which describes dyslexia as a weakness in getting to the sounds of spoken words surrounded by strengths in higher level thinking and reasoning, a model reflecting Dr. Shaywitz’ experience at Yale and elsewhere exemplified by such individuals as acclaimed attorney David Boies, ground-breaking financier Charles Schwab, Cleveland Clinic CEO Dr. Toby Cosgrove, and Oscar-winning director and producer Roger Ross Williams.

Rep. Cassidy (R-LA) Speaks Movingly of Dyslexia's Impact on Families

The hearing was outstanding in that it not only presented the scientific basis of dyslexia, but also left no doubt about the deep impact of dyslexia on children who are dyslexic and their families. Bipartisan Dyslexia Caucus founder Rep. Bill Cassidy (R-LA) spoke movingly about his and his wife, Dr. Laura Cassidy’s experience trying to find help, including a supportive (both educationally and personally) environment for his daughter, Kate, then age 7 years, who is dyslexic: “We were amazed how much is known, and yet not incorporated into public policy.”

This experience led him and his wife to form a new charter school, the Louisiana Key Academy (LKA), specifically to serve students who are dyslexic.

Louisiana Key Academy (LKA) – An Effective Model for Teaching Children Who Are Dyslexic

From a personal perspective, we have visited the Louisiana Key Academy (LKA) and come away extremely impressed and deeply moved by what we saw educationally and personally, in terms of the children and their interactions with teachers and classmates.

Indeed, Stacy Antie, the parent of a child attending LKA spoke, “My son would come home every day and cry and ask, “Mom, why am I stupid and no one else is?” “His self-esteem plummeted. He would never read a book out loud to anyone but me. He became very introverted and never wanted to do anything outside of the house.”

Ms. Antie continued, “A few days into the school year, he came home and was excited to talk to me because he found that a boy in his class had trouble reading too, and so did a girl in his class.”

With much emotion, she added:

“For the first time in his life, he didn’t feel like something was wrong with him because everyone in this school was just like him. His self-esteem picked up a little each day.”

Max Brooks, dyslexic, and today a successful writer, recounted the pain and anxiety that accompany dyslexia when the individual is in a school environment that lacks understanding and blames the student for not reading quickly.

Even today, as an acclaimed writer, Brooks told the hearing, as a result of the teasing, bullying and shame he was subjected to as a child in class, he will not read aloud and did not read his testimony at the hearing.

Seeing and personally experiencing the great harm that is done to students by teachers who just ‘don’t get’ dyslexia led this dyslexic writer to conclude his poignant testimony with this statement, “A little awareness and flexible teaching methods could unlock unlimited potential in these kids who now think they're losers.

If we already have mandatory racial sensitivity training for our police, why not have mandatory dyslexia recognition training for our teachers? It’s so simple, so easy, and when you look at all the other government programs designed to help citizens help themselves, it’s probably the least expensive.”

Thank you Rep. Smith, Rep. Cassidy and all the other Committee members, staffers and speakers for having the courage and commitment to take this ground-breaking step forward. Let’s us unite and act for all children and adults who are dyslexic.

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In response to the many who have asked, below are the recommendations made to the Congressional Science, Space and Technology Committee on September 18, 2014. I am optimistic, once this committee is aware of the strong science of dyslexia, educators will want to align their practices and policies with 21st century science.

Recommendations

To bring education together with current scientific knowledge, the following are recommended:

First and foremost, schools must not be allowed to ignore, fail to recognize or deny the reality or diagnosis of dyslexia.

Schools, including teachers, principals and other administrators and parents should make every effort to use the word dyslexia since it has specific, highly relevant and explanatory meaning. Science has provided its: definition; epidemiology; cognitive basis; neurobiological basis; developmental progression; long-term outcome.

For dyslexia, knowledge of its cognitive basis indicates what symptoms to look for, so that symptoms of dyslexia in the classroom (and at home) are noted and acknowledged rather than as currently happens, ignored or overlooked. This greater awareness and understanding of dyslexia and its impact will benefit both the teacher and student, both in the teaching of reading and in the climate and attitudes within the classroom.

Using the word dyslexia provides a common language facilitating communication among teachers, clinicians, scientists and parents.

For the student, the knowledge that he is dyslexic is empowering, providing the student with self-understanding and self-awareness of what he has and what he needs to do in order to succeed.

For students, knowledge that they are dyslexic also provides a community to join – they know they are not alone.

For the parent and teacher and importantly, the student, knowledge that he or she is dyslexic brings with it the information that the individual is not stupid or lazy.

Cautionary Note

Prior to selecting a reading program, you must always ask: “Show me the evidence.”

We must ensure that programs that are used truly meet the standard of “evidence –based,” and that this scientific term is not used indiscriminately, that is, plunked down to describe a program that does not truly meet the high standard and implications of what “evidence-based” implies.

This means that if a program promotes itself as “evidence-based,” it must be required to produce evidence of a randomized field trial where the program in question is tested against other programs and that this program was demonstrated as effective inimproving students’ reading. The model for such evidence-based field trials are those required by the FDA for medications before the medication is approved as effective and ready for use.

It would be a shame to allow the term “evidence-based” to be used to describe a program indiscriminately, without reliable evidence that the program is actually effective in improving students’ reading. It is important to appreciate that anecdotal or received wisdom is insufficient. We have come too far and made too much progress to allow anything less than valid scientific evidence to be used in determining if, indeed, a program is effective in improving students’ reading.

Thus, there must be a strict criterion of proof emanating from positive field trials – whether used:

in a school to teach children to read;

by colleges to train future teachers of reading; or,

in providing professional development to teachers.

The gold standard must be proof (evidence) that the program improves the children’s reading. To accept anything less would be a regressive step backwards and a loss for all the parents, educators and children who are eagerly awaiting programs that truly have evidence that they are effective.

Watch and listen to Dr. Sally Shaywitz talk about the difference between evidence-based programs and research-based programs:

Before purchasing a program, you must always ask, “SHOW ME THE EVIDENCE.” Critically important is that schools must use evidence-based programs that have proven efficacy; research-based simply indicates that there are theoretical suggestions but does not provide evidence that the program is, indeed, effective.

Evidence-based programs are akin to the level of evidence the FDA requires before a medication can be approved for use. Many, many theoretical, research based approaches, when tested in the field, prove to be ineffective. Our children’s reading is too important to be left to theoretical, but unproven, practices and methods. We must replace anecdotal and common, but, non-evidence-based practices, with those that are proven, that is, they are evidence-based.

Professional development programs targeted for teachers must provideevidence that the students of the teachers taking these programs actually improve in their reading performance. This is in contrast to some professional development programs which seem to improve teacher’s understanding but not in a way that results in improvement in their student’s reading performance.

Schools of education must ensure that aspiring teachers are taught evidence-based methods to teach reading and that the aspiring teachers receive monitored, supervised experience and are effective in implementing these evidence-based methods.

Scientific evidence that reading growth is maximum in the very first few years of school and then plateaus together with new data indicating that the reading gap between typical and dyslexic readers is already present at first grade and persists means that students must receive evidence-based instruction at the start of their school experience and their progress carefully monitored. Waiting is harmful and not acceptable.

Given the rapid growth in reading in the very first years of school and the gap already present by first grade, it seems reasonable to encourage the creation of special charter schools for grades k-3 that focus solely on dyslexia.

The goal is to reach children at-risk for dyslexia early on when reading intervention can be maximally effective, and before the students fall further and further behind. At specialized charter schools such as the Louisiana Key Academy, attended by the children of a fellow panel member, the entire educational team from principal to classroom teacher to physical education instructor understand dyslexia, its impact on students in various situations and are on board to support the students throughout their day.

Here, students learn and there is no bullying by students or frustration expressed by teachers who may not understand the impact of dyslexia. These schools can also serve as resources where teachers can come, spend time and learn about dyslexia, what it is and how it impacts a student and learn specific evidence-based methods for teaching reading to dyslexic students and how to best implement these methods.

There is so much more to tell; for those who have questions and want to know more, visit the Yale Center for Dyslexia & Creativity website: dyslexia.yale.edu or look at my book, Overcoming Dyslexia, which discusses the scientific basis of dyslexia and how to translate this knowledge into practice.

1 comment:

Dr Sally et al: What's in a name? Loads. Not all of us can quickly recite the 4 words for the AIDS acronym, but we all know it's deadly. Most readers of news papers know it's a bunch of symptoms (a syndrome) and is treatable (eg Magic Johnson). So, at the beginning of any speech, paper or book on dyslexia let's introduce it as the Neurological Dyslexia Syndrome. Let's put NDS out there on the street, and (especially) in the teachers' lounge. That could help us to get street people (and, godhelpus, some teachers) to know dyslexia (NDS) is not a catchall term for reading difficulty. Bill Swart

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Please join us at nesca-newton.com/nesca-notes for NESCA's new, award-winning blog. We deliver updates on significant developments in science, education and the law as they affect families of children with special needs, along with practical parenting advice and links to carefully screened and reliable sources of additional information.